Friday, April 19, 2013

It's easy to say that we have faith when everything seems to be going our way. Even when we hit a few rough patches, its still pretty easy to SAY that we have faith. But there is a very big difference between SAYING that we have faith and actually having it. If I had a nickel for every time someone told me to "keep the faith" or to "think positive", I surely wouldn't be contemplating a disability application right now! But the truth is, I do have faith. I don't just say it. It's not just a mantra that I repeat to myself to calm down, or to make a dismal situation seem a bit less dismal.

This is something that I have been pondering for quite some time now (this is what happens when you have hours and hours of time to get lost in your own head!). I've been the recipient of so many pep talks and "stay positive" speeches that I can actually recite word for word in my mind exactly what these people are going to say before they say it. Now I'm not being a jerk here, I love and appreciate the people who support me and have good intentions with kind words. I also know how awkward people feel around sickness, unless they are dealing with a sickness themselves. They don't know what to say, but they feel that they have to say something. Sometimes just to make themselves feel less guilty about not knowing how to behave around the sick. But each time I get the "have faith" pep talk, I wonder if the person giving it to me truly has faith themselves? How would they feel, think, and act if they were in my shoes, and not as an outsider looking in?

It's true, having daily faith is very important. It's important to think positive and to hope for the best. But it's more important to KNOW that things are going to get better, whether you say it or not. It's hard to explain....it's just something that you feel inside. I didn't always have faith. When my body began to seriously rebel against me, it was damn hard to believe that it was going to get better. It was hard to stay strong and not crumble when I felt like I was in the pit of hell. I looked for any way out of it that I possibly could find. I grasped at straws out of desperation, never believing in myself and my own spirit to see me through. I walked around telling people that I had faith but in reality when the going got tough true faith was nowhere to be found.

Do you have faith? Really and truly? Faith doesn't necessarily have to be about religion. True, I am Christian and I do believe in God and Jesus, but I also have faith in my own spirit, and in the purity of nature. Every day I think about my faith, and every day is a challenge to some degree. But, the real tests only happen ever so often, and it is during these times that I must put my money where my mouth is.

The day before yesterday, I went into anaphylaxis (severe and sometimes life threatening allergic reaction) after experimenting with a new spice. I'm not going to lie, the sheer terror of it all is indescribable, and its not something that I would ever recommend experiencing! Worst of all, this happened when I was out in public by myself. Was I going to have faith, or was I going to succumb? I got into my car and prayed, asking for guidance and safety to get me home. To be honest I don't even remember much of the ride home, I just know that I got there. When I got home and felt my reaction becoming more intense, my first instincts were to down the entire bottle of Benadryl, and if that didn't work to call 911. But something inside me told me to just sit down for a minute. At this point, my throat had swelled and my chest was tight. I closed my eyes and focused on breathing. The waves of adrenaline pummeled my body. My face felt hot yet the rest of my body was freezing cold. As hard as it was, I had faith. I had faith that I would get through this, and that my mind was more powerful than this physical reaction. I meditated hard, catapulting myself to another world away from the fear and violence.

After 2 hours, the worst had passed and I was left feeling like a rag doll. Even though my body felt weak and worn, my mind felt intensely stronger. I gave myself a big hug. I had made it. I got through it with faith and not with physical medicine but with mind medicine. I once again proved to myself that my faith is real and true, just like I did all those months ago when I threw out the "matter of life or death" Florinef prescription.

I believe that this was a big turning point in my healing. I believe that my body just got a little stronger, and I feel even more in tune with myself than ever before. The mind should never be underestimated! Its so much more powerful than we give it credit for. There are monks who can stop and start their hearts at will, just using their minds..who says that we can't do amazing things like that with our minds too?!

Now I'm not advising anyone to throw out their medication, or to not seek medical help if they really feel they need it! What I'm saying is that we should all stop and re-examine our faith, no matter what kind of obstacles we're dealing with. Do you really have it, or are you just saying it? Know the difference. Grow your faith...because it will be the difference between coping and healing. God Bless and Namaste :)

Saturday, April 13, 2013

Today is a very special day. It marks the 6 week anniversary since I've kicked salt water to the curb. Yup, you heard it right. No salt water for 6 weeks now! I waited to make this post because I didn't want to jump to any conclusions too fast, but today it has been confirmed.

Many who know me can recall that I was diagnosed with Renal Salt Wasting Syndrome and Symptom of Insufficient Anti-Diuretic Hormones over a year ago, after a brush with death in the hospital. Tests showed that my Aldosterone (hormone produced by the adrenal glands that regulates sodium and electrolytes in the body) levels were flatlining and that my kidneys were unable to hold onto salt. Doctors told me that this was an incurable form of Dysautonomia and that I would be stuck with it for the rest of my life, but the good news was that it could be managed with medication. The poison that they prescribed me was called Florinef- an awful concoction that left me with swollen legs, nausea, dizziness, and a constant feeling like my head was underwater. The way that I could best describe it would be like having an anvil as your head and trying to function with it. Aside from that, cankles are just so incredibly unattractive. So after 2 weeks of that nightmare I threw out the pills and got onto the best salt that there is on earth- Hawaiian Bamboo Jade sea salt.

I continued to get my weekly saline IV treatment that the doctor had ordered for a course of 60 days, leaving them under the impression that I was still taking the Florinef. If there's one thing that MDs really hate its to not take their drugs!

The HBBJ sea salt really saved my life. I carried around a jug of water spiked with the stuff and through some experimentation figured out that I needed to drink about 4 oz every 30-45 minutes in order to stay stable. I could out-pee any racehorse on earth but that side effect beat the hell out of what that Florinef did to me.

This went on up until a little more than a month ago when I noticed that the water was tasting more salty than usual. I reduced the amount of salt in the water little by little until I could barely taste it anymore and was doing fine! Then came the ultimate test, an accident really. I filled my water bottle in a haste to leave the house before the rain storm hit. About an hour into my errands I noticed that I had forgotten the salt! I searched my bag to see if I had any stashed and there was none. I was a little ways away from home so I decided to just continue on and get some salt when I got home. Nothing happened! No sick feeling, no dizziness, no drama.

The next day I spent home, so I continued with the accidental experiment and tried going the day without the salt water. I still had some salt on my food like any healthy person would do, but none in the water. Guess what? I was fine!!

So a month later with no salt water, I decided to get my aldosterone and renin levels checked again to see where I was at. I got the results this morning, and by golly wouldn't you know my levels are now within normal range. That's right. Incurable my ass! They surely didn't know who they were dealing with. I can't wait to call my endo and GP and unload this phenomena on them. It will be the most stupefying tap dance anyone's ever done on their brains!

This is truly a turning point for my health, and I could not have done it without perseverance, and most importantly faith. I never once believed that I was incurable. I never believed that I was going to be stuck with any disease for the rest of my life. I believed, and continue to believe, that God will heal all my ailments. I sacrificed everything I had to. I was willing to do whatever it takes, EXCEPT to keep poisoning myself with symptom managing medications. I won't say it was easy. There were so many times that I felt so desperate, like I couldn't deal with life and just wanted to take a pill to make it all go away. But that inner strength inside me, as difficult as it was to draw up sometimes, kept me going and reminded me that band-aids don't heal gunshot wounds.

Miracles are real. I am a walking testament to it. INCURABLE. Do you know what it feels like to be told that by a doctor? It feels like the worst pit of hoplessness and despair that you could ever fall into. It's like being handed a life long prison sentence without the possibility of parole. For a while it became who I was. Shannon the INCURABLE. Shannon the SICK. Shannon the INVALID. I walked around depressed, downtrodden, and helpless. Ugh it was awful! Until the day I said enough is enough, threw out the prescriptions and the snake oils, and got on with it. As time passed I saw myself as Shannon the STRONG. I wasn't going down without a fight, and today, I sit here writing this post as Shannon the MIRACLE.

My advice for today : DON'T GIVE UP HOPE. Doctors are human, not God. Don't let them hand you a death sentence. Believe in yourself and the miracle that is your body. Trust that you've got everything within you to get well and get out of the way! Give yourself the best treatment, both physical and mental. Don't beat yourself up, and most importantly don't believe the hype! Whatever it is, you can overcome it with faith and perseverance.

Best of health and happiness to all, and now I leave you with the most appropriate song for the day :)

Monday, April 8, 2013

In a recent post, I announced that I was going to give the Nutritional Balancing program another try for 3 months to see if it made any difference in my healing. Well I'm announcing now that I'm abandoning the program.
I was really excited about starting the program given all the great things I heard about it through friends. As I said in my last post, the science really did make sense to me. I received my lot of supplements and was ready to go. Being that I am so incredibly sensitive to EVERYTHING, I decided to start with 1/4 dose for the first couple weeks and then gradually build up to the full dose. Unfortunately this only lasted for 2 days and I crashed so hard that I felt like I was back to square 1. Common sense told me to stop taking the supplements, which I did, but it still took me 3 additional days to recover. I've always been really sensitive to supplements and medications (I've baffled a large number of medical professionals due to my inability to take prescriptions), but this was a bit much.

To add insult to injury, I phoned my new "caring" practitioner and explained what had happened. Her first response- "you must have not been doing it right". How could I "not do it right"? I ingested 1/4 of the recommended dose (actually 1/4 of a dose that I was supposed to be taking 3 times daily) and felt like death was breathing over my shoulder again. Although I felt like verbally impaling this woman, I was polite and said, "I just don't think this is for me. I would like to send you the unopened bottle of supplements that I have for a refund." Her normal "caring" demeanor quickly changed into survival mode as she snapped back at me. "There's nothing I can do for you, you have to call the lab. The supplements were only ordered in my name so you could get a discount." And before I knew it she hung up on me!

Now I've been working very hard on the way I deal with stress. There's no doubt that this woman had me pretty ticked off, but instead of calling her back to tell her what to do to herself I decided to call the lab and see if I could at least redeem some of my money. The girl over the phone was actually quite rude as well and sounded very irritated that I wanted to return the product. She said that the only possibility of refund would be a store credit that could be used on different supplements. Different supplements!! I'm trying to give the crap back why would I want more of it?

I hung up the phone feeling very disheartened. I had high hopes for this program...I really did.

I know lots of people who strongly believe in this program, and they continue to take these supplements even though it makes them feel like hell in the name of "detox". Some of them even have very young children on it. Judging by what these supplements do to grown adults, I can't imagine what they do to babies. As adults we make choices on what to do with our bodies, but it is my humble opinion that assuming a 3 year old is in "burnout" because some "healer" told you so based on a non-medically recognized test, even though the kid appears pretty healthy to the eye is just insane. How can a 3 year old possibly have experienced enough stress in their lives to already be in adrenal burnout? Many of these "practitioners" don't even know how to read these tests properly! Oh yeah, and they tell you that you have a slew of "hidden" problems and that it could take over 5 years for this miracle program to take effect. Bravo you geniuses of marketing! In my previous life in advertising, a part of me might have actually admired these people for their stealth tactics. Nowadays I'd love nothing more than to see them burn (in hell).

My point is I've been through the mill with doctors and hospitals. I've seen the seedy underbelly of the healthcare system and been allowed to slip through the cracks many times. I've been shuffled around from endocrinologist, to neurologist, to cardiologist, to renal specialists, to infectious disease specialist and back around again. I've sent entire medical teams to the corner scratching their heads. I've paid for these specialists with the pocket change that came from the giant piggy bank (money I was saving to go on a month long vacation one day). One thing I will say though is that the corruption doesn't stop there. Oh no, I wish it did.

Flip side of the coin- the alternative medicine community. Just because they are Naturopaths, Chiropractors, and "Practitioners" doesn't mean that they aren't willing to bleed you dry like the MDs will. I once had a kinseologist claim to know what was wrong with me based on touching points of my body and doing some strange sort of counting. He would sit these little clear bottles of liquid on my stomach and then do this counting. He told me that it was my pancreas causing all the trouble, and that there was nothing wrong with my adrenal glands or kidneys. He then would give me acupuncture and ordered me to eat nothing but vegetables. Twice a week I would see this man, at $80 per visit. I guess his magic touch didn't tell him that I was in a severe catabolic state and in desperate need of extra protein and fat. Back to the hospital I went.

After this was when I had my run in with the first Nutritional Balancing practitioner. The one who ordered me to shove coffee in my butt and sweat in the sauna every day. Had me on the same horrible supplements. The one who's instructions threw my sodium down so low that it put me back in the hospital. Again.

You'd have thought I'd learned my lesson right? Wrong!! Next I put in a call to an "adrenal specialist" who charged a whopping $300 for a 30 minute phone call (not even with him but one of his "representatives". All to tell me that I needed to consume inhuman amounts of synthetic vitamin C and pantothenic acid. Oh yeah and I had to buy it all from his store because no other brand in the world works but his (averaging $50 for an 8oz bottle that would have lasted me 10 days on his protocol). I explained to them that my wallet was in serious pain and that I am very very sensitive. They then told me that they were rejecting me as a client because I couldn't "commit" to the protocol! As disgusted as I was at the time, my guardian Angel was sure looking out for me. I know a few people, particularly someone very dear to me, who got really screwed up by this guy and his shotgun approach.

6 months later brings me to the last and most recent attempt at an "alternative program". After this last one I'm done. I'm over it. I will no longer contribute to these crooks taking advantage of sick and desperate people. I've learned enough, and I trust in God and my body's own ability to heal. Time to kick it old school and LET FOOD BE THY MEDICINE. Grams would be proud.

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About Me

Hmmm where do I start? Let's see....my friends all affectionately refer to me as "Bubble Girl"! I am a fun loving chick, born in the North and raised in the South by the grace of God :)
I've pretty much been blacklisted by every doctor and allergist in South Florida LOL! When I walk in they cringe! They refer to me as the "green zebra". Apparently in medical school they label patients with weird mystery illnesses as "zebras". You see plenty of horses but not too many zebras. And I am a green one..imagine that! The unicorn of allergic patients! Some say mast cell disease, others say MCS, others say parasites/leaky gut, and others say limbic system imbalance, but who knows. Hell, it could be all of the above as far as I'm concerned!
Anyway, I've sadly gotten used to being Bubble Girl and I now try to find the humor in it all as often as I can. I haven't given up on finding a cure and one day being "normal" again (well normal for me anyway!). I love making new friends, so feel free to drop me a line. Even if you just want to rant and rave about how much it sucks to be sick. I'm always up for a round of bitching and moaning :)